CLINICAL TRIALS SAVE LIVES

Despite what may have appeared to be a giant bashing of clinical trials for the entire week, I want to end this week on a high note.

One of the first tweets from the ASCO meeting that caught my eye came from Cliff Hudis.  Dr. Hudis is the newly elected president of the American Society of Clinical Oncologists and he is the chief of breast cancer medical service at MSKCC.  He also happens to be my friend's oncologist.  No HIPAA violation in making that statement..... just an observation.  I have more intimate knowledge of Dr. Hudis than even he knows.  Indeed, he has no idea who I am.  Although I volunteer at MSKCC and my mom is an active patient at the hospital, she is treated at a suburban facility.  Hudis is at the main campus and on E53rd.  I'm pretty sure he doesn't know he's lovingly referred to as Hudis.  "Hudis said...."or  "Why is Hudis...." or  ......  "What Would Hudis Do?"

The tweet was about the abysmal rate of participation in clinical trials.  Those of us who have a keen interest in research are in agreement.  We need to find ways to fill trials so the research can be completed and the results are shared.  This is the way we make progress.  By studying.  By taking an idea and translating the idea into a well designed study.  By developing the study and then, the biggest key.... recruiting participants.

Yes, funding is essential.  The best way to make the most efficient use of funding is by seeing that trials are filled quickly. A fully funded study that takes too much time to fill equates to a wasteful use of resources.  What to do?

My first suggestion?  Find better ways to notify the public about ongoing trials.  The website, clinicaltrials.gov can be cumbersome to navigate. Or, if you are fascinated by ongoing research, it's very easy to get lost for hours.... yes, hours...... flipping through studies.  Every study in the entire world that involves human participants is included on that site.  For every disease, illness or ailment imaginable.

Last night, as I was preparing this post, I wanted to see how the site is broken down.  Found the section on "Topics" and got lost in the mental health area for quite some time.  Everything about the brain fascinates me.  Finally found my way to the cancer area where there are tons of sub sections and of course, breast cancer trials are in the thousands.

Streamline the process.  Make it easy to locate trials pertinent to the unique needs of individual patients.   I am impressed with the design of Breast Cancer Trials  which matches trials to a profile set up when joining the site.  I am equally impressed with the Medivizor clinical trial matching component.  In both cases, email notifications are sent when a matching trial is found.

Of course, I'm a big fan of the Army of Women.  One important distinction is that the Army of Women studies are not drug trials and notifications are sent to everyone who has joined the database.  The reason for this design is simple.  Army of Women studies are about understanding the causes of breast cancer and improving quality of life for those of us who are breast cancer patients.  Although they are subject to the same rules and regulations, I tend to differentiate between clinical studies and clinical trials.  Studies are observational.  Trials involve drugs.  That's not a hard and fast rule.  It's my own way of distinguishing one from the other.

On that note, please do explore all four of these options.  Medivizor is still in invitation only mode.  Highly suggest requesting an invitation if you have diabetes or cancer of the breast, prostate or colon.  Medivizor will do the exploring for you.  Army of Women lists all of their open studies on their website and again, I would suggest taking a peek around.  In fact, I just received my saliva kit for a study I joined through an Army of Women email.

Breast Cancer Trials allows you to view all trials without enrolling in the site which is helpful if you are doing a bit of homework.  I'm looking for a specific cohort of trials and the site is beneficial in narrowing them down.  Lastly, clinicaltrials.gov hands down has the most comprehensive information of all.

Test drive them.  If you are eligible, consider participating.  I'm lab rat at heart.  I've participated in at least four trials that quickly come to mind.  And yes, I signed lengthy consent forms each and every time.

Addendum ....  Since posting, I've found other places to seek out clinical trials.  I'll keep a running list and if anyone is aware of sites that are patient friendly and free to access, please share via email or in the comments...

Chemotherapy Advisor has a link in the upper right of the screen. May require sign up, login (free) to access that part of the site.

Cure Launcher is phone based.  Although I've not used it, it looks like the real deal. 

There was a sarcastic ending to this post.  I've since deleted it.